my time at the conf

i know i never wrote about the wonderful confrence was great i met kasee stratton and saw tim harthsone and david brown and many others also was great to see marie and finaly meet rapael hes such a sweety i also went to the antartic workd and went shopping but i will start at the beginnin on the friday we got on the plane no probs jsut the usual forms go through security ay y didnt you put the pump through we allways have to tell them im attached to this didnt need out letter all good al good teill we got there they mannaged to loose the arm rest one arm rest of my chair didnt find it eather well got to hotel got to oru room unpacked our bags went downstairs to see who we could find we found nicole tebble and we had big chat to her looked at the hotel and went and found rob and time meet and greet were great saw soem old firends and made a few new ones saw nardia again andreas mum a lady that we started out with a hoel group of us not very big then sat we woke up late and went downstairs an attended the mroning sessions rob and marie talked bout there books and rob got me to talk about my experiences and stuff ten i went to shops with alex who is mums friend we got lots of souvaneers things then we cam eback for the formal dinner there was the silent acution i bid on a gorgous bag and got it sunday saw a few people said good bye and thenwe went to antartic world it is gorgous there then we flew home was great fun mum couldtn come coz dad had eye op and grandpa wa in hosp hes kinda k at the momebnt but he couild go anyday we dotn know when

my nz speach

wwell no oen told me to speak so i never wrote soemthing then rob got me to talk thenhe asked me to email him a copy but i didnt have oen so he jsut said write anythign heres wat i wrote
hey i jsut thought id email you the talk out of my head as havent written it down so here it is to my memory but do put in the newsletter a warning liek it not exactly wat you heard at conf as it wastn written down

My name is ellen howe many of you may know me form the list and from the conferences but to refresh ur memories i have colaboma of the eyes hearing loss cleft lip palate gut probs growth probs and hormone probs and a few other minor things along the way but hey i kept going i mannaged to come to newzealand with out mum this time jsut with mums friend who many saw now ten years ago this wouldtn of been possible i acutaly went to nz ten years ago to see my aunty liz and ill tell u what we had to do we had to send about three cartons of forumla to her house bout a carton of stoma surplies bout five extra tubes and a few other stuff now ten years on all i got is a bag with clothes formula and pump and thats basicly it as i allways in and out of hospital with abdominal migraies oh those memories have been coming back alot lately as that has been a topic on the charge list of late but after five years on tpn and a gall bladder removal i was finally able to finnish school with better xpecttations than anyone had of me i remember when my old head teacher of the support unit retired she said i was in about year eleven and she said to me i would love to read the paper one day and find that you are soemthing famous and im hopign ehr dream ccomes true except maybe nto in the way she was wanting but i am hopign to be a disability advocate especialy an advocate for charge syndroem how mny times have you all been told by drs that there is no hope your child wont walk or talk he or she isnt interlectualy able you will have to put in a this or that MANY im ;sure well we need to get that out of peo;le teach those people that they are worth soemthign and there is soemthing otu there ill tell you this i thought there was nothign out there i couldtn do floristry as tafe wouldtn let me but i do have a positve otulook onlife and that does help i dedicate my positiveness to my wonderful 83 year old grandpa mums dad who at around october last year had a stroke in mass walked bout ten mins to the local dr after said stroke now keep in mind grandma idnt know what this is shes great to then got in car and drove him i say and mean drove him to the ane where they told her she should of got an ambulance well a couple of months later they found he had pancreatic cancer and was only given six months or so to live then in may was six weeks and now its neraring christmas and hes sitll with us after a three week stay in hospice that man is my true hero ad i thank him for what hes shown me hes shown me we can all defy our drs and keep on goign and i want to pass his message onto others my wonderful grandpa was also a ww2 vet and hes also got diabetes and a number of other probs including when we end up in pathology close at times to each other the ladies faint coz we both got bad veins but he doesnt let it stop him and hes showd me not to let it stop me so everyone look for that posxitive person in ur life and keep them there its really special mum and dad have been great to and all my friends and family funny thing is i allways make firneds who cant talk inmfact ask my two taxi drivers who take me and bring me back from roselands every day out of one of five day lol in other words i go four days a week they would tell you everytime i get at the back kristys shoes r off thats coz she took them off and it ture i take my firends shoes of in the hot weather they catn talk to me but i jsut know its really good the programme i do at northcott is really good affords good for me to so i see my self at the next conf wich i do believe is in perth telling you all ive left roselands and am doing some volanteering soemwhere but really i wont leave roselands well not in two years wat i think is i may not do cpp there butr i may volanteer one day in the future never know the people in charge that hasve helped me otu the most are Rob last if it wastn for him id nto b doing the talking i do now days and then soem as people say lol Dr george williums who did so much for us who r disabled by soemthing or another that i heard he was sacked for tring to b an advocate good on ya George you are the greatest keep trying sharon who is a good firend and follows me through the lsit or used to and of course marie and ken patterson who started this great thing when i was little was just mum and ken marie rob and pauluine and dimo and now its all these wonderful people tim harthsone and david brown whos brougth charge to the world love you all and keep going